TJ's Journey: Built on Love

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TJ's Journey: Built on Love

We created this space to share TJ’s health journey with our friends, family, and community — the highs, the challenges, the milestones, and the moments of joy.

This page is dedicated to our amazing son, TJ- a brave, funny, construction-loving little boy who is living with a rare genetic condition called DEGS1, a type of leukodystrophy. Welcome to TJ’s Journey: Built on Love 💛

This page is dedicated to our amazing son, TJ — a brave, funny, construction-loving little boy who is living with a rare genetic condition called leukodystrophy. It’s a place where we can keep everyone updated, raise awareness about leukodystrophy, and most importantly, celebrate the strength and spirit that TJ shows every single day. He may be small, but he’s mighty — and just like the diggers and bulldozers he loves, TJ is moving mountains with love, support, and courage. Thank you for being here. 💛
Your love and encouragement help us build a foundation of hope — one day, one smile, and one post at a time.

09/13/2025

⚾️ Big night for TJ! Tonight was his first game with the High Point Miracle League, and he’s officially playing for the Yankees! 💙🤍

He had the best time out on the field, from hitting the ball to scoring a run 🙌. Our hearts are so full seeing him be part of such an inclusive and joyful opportunity.

We’re thankful for this amazing program and excited for a great season ahead!

09/09/2025

Big day of appointments for TJ at the hospital today 💪💙 He will have a bone density scan, check In with his orthopedic surgeon on how his hips are healing, see his rehab medicine doctor, and meet with his amazing leukodystrophy team.

While we don’t yet have a definite answer from yesterday’s drug trial presentation, the team is feeling optimistic 🙏💛 We should hear more within the next few weeks, and in the meantime we’re continuing to trust and pray for God’s perfect timing.

09/08/2025

✈️ We’re off! TJ is on the plane and headed to his appointments. He’s got some very special encouragement for the journey- his class made him the sweetest good luck banner, and he’s traveling with the school mascot plushie, Cora Cobra 🐍💙

We’re so thankful for his amazing school and classmates who make him feel so loved and supported every step of the way! 💛

09/07/2025

🙏💙 We’re asking for your prayers for TJ and his medical team tomorrow.

In the morning, the Leukodystrophy team at CHOP will present TJ’s personal case to the pharmaceutical advisory board for the proposed drug trial they believe could benefit him. This is a pivotal moment in his journey.

We trust fully in God’s sovereignty and know that He is at work in TJ’s life. Our prayer is that the team will listen with open ears, approach with open hearts, and make a strong, thoughtful decision based on all the right facts.

Please join us in lifting TJ, his doctors, and the advisory board in prayer as they seek the best path forward. 💛

09/05/2025

This week brought TWO milestone moments for TJ! 🎉

⭐ He “leveled up” at Cub Scouts, moving from the Lions Den to the Tigers Den 🐯. We’re so proud of him for earning his adventure awards and for the joy he brings to his pack.

⭐ TJ also got to perform with his class for Grandparents Day 💛. They sang L.O.V.E. and even played along with plastic trumpets—he was absolutely beaming with happiness!
We are beyond grateful for these sweet moments, celebrating all the joy, growth, and experiences TJ gets to share with us 💕

09/03/2025

🙏 Big week ahead for TJ 🙏

Next week, TJ’s incredible leukodystrophy team will present their case to the pharmaceutical team in hopes of starting a life-changing drug trial.

This drug has the potential not only to extend TJ’s life, but also to pave the way for others in the future who may benefit from it. His team has worked tirelessly behind the scenes—researching, preparing, and even traveling overseas to learn how this treatment is being used in cases similar to TJ’s.

On Monday, September 8, they get one chance to present and advocate for TJ. One chance to make the case for hope.

We ask you to join us in prayer- for wisdom for the team, for open hearts and minds from those making the decisions, and for God’s perfect timing in this process.

💚 Whatever the outcome, we trust that TJ’s life and story are being used for something bigger.

08/25/2025

🌟 Another week of successes for TJ! 🌟
This week has been full of growth, milestones, and answered prayers:
✨ TJ completed all of his pre-screening appointments in preparation for the upcoming drug trial meeting on 9/8- a big step forward on this journey!
✨ With the start of first grade, TJ also moved up in church to Avenue Kids, and now gets to attend big church with his family each week. We are so thankful for our church family and the way they make sure TJ always has an inclusive, welcoming experience.
✨ The sweetest news of all- TJ asked Jesus into his heart ❤️
✨ For the first time since his hip surgery in June, TJ used his gait trainer/walker! His strength and tone look a little different post-surgery, but he is working hard and showing so much determination.
✨ And tonight is a huge milestone- TJ is sleeping brace free for the very first time in over 11 weeks! 🎉

We’re so proud of him and grateful for every milestone, big and small. 💚

08/17/2025

✨ Big news for the Johnson crew! ✨
We are so proud to share that Tim (TJ’s dad!) and Tim Johnson Landscaping Inc. have been featured on the front page of Lawn & Landscape magazine. 🎉

This article highlights not only the incredible work Tim Johnson has poured into building the business- two office locations and nearly 100 employees strong, but also the heart behind it: navigating life, family, and business while supporting TJ through his journey with DEGS1 leukodystrophy. 💚

We are humbled that TJ’s story continues to ripple out into the world, inspiring others through his courage and joy. To see his journey shared alongside Tim’s hard work and success is such a beautiful reminder that family, perseverance, and community make all the difference.

We’re incredibly proud of both of them; Tim as a leader and father, and TJ for showing us every day what strength looks like. 💪🌟

📖 You can read the full article here:
https://www.lawnandlandscape.com/magazine/
https://drive.google.com/file/d/1oVeQw1yJP6mML-Jrh6Qh5Ymh7LMS2d8f/view?usp=sharing

08/16/2025

✨ Did you know? ✨
Leukodystrophy is a progressive disease, often leading to the loss or degeneration of skills over time. While every journey is different, and TJ is paving his own unique path, this reality makes each milestone he reaches that much more meaningful. 💙

Today, we’re celebrating something that may seem small to some, but for TJ, it’s HUGE: drinking independently from an open cup! 🥤🙌

We continue to praise God for His faithfulness in TJ’s journey and for every step forward, no matter how big or small. Each victory is worth celebrating, and each milestone is a reminder of hope. 💛

08/13/2025

✨ Behind the Scenes: Preparing for Big Steps Ahead ✨

While you see the smiles, adventures, and milestones on TJ’s page, there’s also an incredible amount of work happening quietly in the background- both from his medical team and our family- as we prepare for the hope of beginning a pivotal drug trial that could change the course of TJ’s life.

Before the trial can begin, there’s a long list of screenings, tasks, and visits to complete. Our local pediatrician and specialists have been working alongside us to get everything scheduled and coordinated.

Yesterday, TJ braved his first lab draw for the trial- nine vials of blood! 💪 He’ll return for another round next week. Tomorrow, we’ll travel to Wake Forest Baptist for a series of baseline appointments with an ophthalmologist. These eye exams will be repeated every three months once the trial begins, helping the doctors monitor his health closely.

It’s a lot of preparation, and sometimes, a lot of waiting, but every step brings us closer to what we pray will be a life-changing opportunity for TJ. Thank you for walking alongside us, praying for smooth appointments, and believing in the big things ahead for our boy. 💛

08/12/2025

Some of the sweetest moments happen when it’s just TJ and his mom, and he’s feeling extra chatty. 🥰

While it can sometimes be challenging for TJ to piece together his thoughts into a full story, tonight he lit up talking about his day. He shared that it was a good one- they read a book in class, built with Magna-Tiles, went to PE, had lunch… and he even met a new friend who has a mohawk. 😄

It’s the little victories, conversations, and connections that make each day so special. 💛

08/10/2025

🚒 A special surprise before school starts! 🚒
This evening, as we were outside enjoying the summer air, a firetruck came down our street and turned around in the cul-de-sac. TJ’s eyes lit up the moment he saw it! The firefighters stopped to chat, gave him a hat, and even a sticker badge. It was such a joyful, unexpected moment- and the perfect way to end the day before a big milestone tomorrow.

📚 First day of 1st grade 📚
Tomorrow, TJ begins a brand new chapter-1st grade! This year brings some big milestones:
-brace-free during waking hours
-in his wheelchair full-time
-sleeping without his brace, with a supportive pillow between his legs

Behind the scenes, so much care and preparation has gone into making sure TJ starts strong:
-meetings with his EC care team and new classroom teacher
-adaptive school supplies ready to go
-IEPs reviewed and updated

One big change this year is that TJ’s one-on-one will not be returning. Please join us in praying for a seamless transition as a new support friend steps in—one who will be the perfect fit for TJ’s needs and personality.

“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.” – Jeremiah 29:11

Tomorrow marks a fresh season—full of learning, growth, and opportunities to see God’s goodness in both the everyday moments and the extraordinary ones.

Address

Statesville, NC
28625

Website

https://www.gofundme.com/f/join-tjs-fight-against-rare-disease-at-chop?attribution_id=sl%3A4785e056-be36-4169-9d54-a29bb

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